Category: memories

Posted on

“Down syndrome.”

Today marks the first day of Down Syndrome Awareness Month. In the beginning, I couldn’t even say those words. Because if I didn’t say them, maybe this wasn’t real. When I had to say them, I would speak them in shame. And I remember that I wouldn’t whisper because then I would’ve had to say them again, louder. I couldn’t bear to say those words more than I needed to.

And as soon as I would say it, my baby has Down syndrome, I would start crying. They would tell me they were sorry. Then I would feel this rage and shame and despair. Rage at them… how could they say that about my baby? Deep shame over my despair. Rage at myself for all of it. How did I expect them to react? Look at me, crying while holding this brand new life in my arms. A juxtaposition of deep pain and new life. I am exhausted just thinking of those times. I remember them like they were yesterday, and also feel like someone else lived them.

I can’t quite remember when the tide began to turn, when the sea began to recede and I started to see more solid ground under my feet. I imagine it happened slowly, as the tide goes. As times of grief and sorrow go. Little cracks filling up, becoming stronger. Feeling more sunlight than darkness. A slow return to life, where the hard loosens its grip so you can feel more than just anguish.

My precious gift of a baby brought me back to life all those years ago.

And now, here I am. From not being able to say the words “Down syndrome” to shouting them in celebration. Grateful for the life I have been given. Seeing things I never would have seen if I hadn’t been drowning. I found my way only because I was lost. Don’t get me wrong… things aren’t always easy. Because, well, that’s life. But I get my strength from the hard, from opening doors for my son and shouting his worth. And then watching him open his own doors and shouting his own worth.

For me, this is what Down Syndrome Awareness Month means. Showing people with Down syndrome living their lives. Lives filled with ups and downs, celebration and heartache. Working hard and being successful. Or not. Falling down, getting up. Sometimes things not working out. And that’s ok. Knowing that the love of those who love you will sustain you above all else. It is about people with Down syndrome living deep, rich, authentic lives, just like the rest of us. Being seen as a person who happens to have Down syndrome. Not a stereotype, but a person. Not a boy with Down syndrome, but Ian. The one who rescued me from the deep.

Posted on

Open Heart Surgery Memories

You know how you have moments in your life that end a chapter and start a new one? Those moments where time stands still briefly and you know your life will never, ever be the same? We had two such moments-in-time — an ending and a beginning and then another ending and another new beginning — way back in 2009.

The first was Ian’s birth and finding out just moments after he took his first breath that he had Down syndrome. Oh the fear of what life would be like. I couldn’t process the enormity of what I had just been told. My baby was born a little after 1am on Easter Sunday but I couldn’t have known that that day would be a rebirth for all of us. And then it seemed that Ian’s birth day wasn’t done with me yet.

I remember sitting in a chair at a table in the parent room, listening almost as if I wasn’t really there, as they told us our brand new baby had all these things wrong with his heart and would need open heart surgery soon. I glanced at the clock on the wall. A few minutes past 9pm. I remember muttering to Jason, “Oh, how your life changes in 24 hours.” And then thinking, with remarkable clarity, that I couldn’t move. If the hospital was on fire, I knew without a doubt that I could not move. I felt so many emotions that I couldn’t feel anything at all. An end of a chapter and beginning of a new one. The end of life as we knew it. A better one was to come, but we couldn’t have known it then.

And then Ian came home and Joey just saw his brother. He showed us the ultimate gift of unconditional love. And still does. Over those first few weeks and months, we settled into life with two boys that felt pretty much like what I thought life with two boys would feel like. And as our new baby began to unfold himself to us, I realized that I didn’t have a baby with Down syndrome. I had Ian. A perfect gift.

The time for open heart surgery came 11 years ago today. And I couldn’t let him go. This baby who saved me when I didn’t even realize I needed to be saved. The end of a short chapter, the blessed simplicity of life with a newborn.

The roller coaster began. He endured a pulmonary hypertensive crisis as soon as they started his surgery; they couldn’t even close his chest that first day; he needed a pacemaker for a few days to make his heart beat properly; he couldn’t come off the ventilator for nearly a week; he blew all of his IV lines and they had to try to get an IV into his head after shaving it; he had another pulmonary hypertensive crisis and needed his body paralyzed in order for it to pass; when he came off the ventilator, each eye was going in a different direction swirling around, which terrified me; they had to restrain him on the bed so he didn’t take out his IV lines; when he finally came off the vent he was awake for 26 out of 30 hours metabolizing the sedation; he needed methadone to ease his narcotics withdrawal; he had to learn how to eat all over again; he was on the ventilator for 6 days and in the ICU for 10 days. On the day of discharge, we burst onto Greene Street in the intense heat and humidity of an August day in Baltimore and thought, “NOW begins the rest of our life!” The beginning of a beautiful new chapter.

And now? Our life is better with Ian. Our life is better BECAUSE of Ian. His light, his joy, his love… they radiate from him and the rest of us are blessed to bask in it. I don’t have the life I planned but I have the life I want. On this day, 11 years ago, the amazing staff at the University of Maryland saved our Ian’s life. The words “thank you” never seem adequate but I know, without a doubt, that ALL the joy of these past 11 years is thanks to them. They are the reason his light shines!

Posted on

Memories: Going Into 3rd Grade

I created this sacred space as a place to share our journey. I am not sure just yet where it will take me. But as memories pop up, I see how far we’ve come and I want to tuck them into this space as well. Not just preserving them but also reminding me how much we’ve grown. Well, mostly how much I have grown. So from time to time, I plan to share what I said then and where we are now. Here goes…

Then: June 2017, Ian was 8, going into 3rd grade

Down syndrome and special needs friends, while I’ve been loving my week at Scout Camp with Ian, it’s also shown me that we may be at the point where we need to share with other kids more about his “disability.” He’s had a blast but there have been moments where kids have asked why he talks “funny” or that he should be more clear (right in front of him) or don’t have as much patience or understanding of why things may be different or harder for him. How did you all handle this phase of parenting?

When Ian was a newborn, I used to have a “speech” prepared when I had to share that Ian had DS so I could set the tone for how others saw my son. So I am wondering if I need to do that now? Then I was thinking that it is really Ian’s story to tell… maybe he needs to be the one to explain that he may need to repeat something or need a helping hand? Because after all, it IS his story.

And today he was really good about telling the kids that he goes to speech and OT over the summer and that he has speech at school and with Ms. Ahna. He shared how he’s working on speaking more clearly and slowing down. And one warm-hearted little guy even told him, “Ian, I went to speech too!”

But then I think maybe if we share about the DS first that kids will see him as “different”… but then they are already starting to see differences. Ugh. And I’ve also noticed this stuff lately in other unstructured social situations. But the one bright light I see with older kids is how much patience and empathy and understanding they have for kiddos who may need some extra help and that makes my heart soar for the future.

Sooooooo, this long post is to ask for advice… how do I help other kids see and accept what may be harder for Ian without making them see him as SO different? And in keeping it real, this hurts my momma heart so bad… a growing pain for sure. And this parenting gig, typically-developing or not, is HARD. But I also know that Ian’s light shines bright, he never gives up, never gets down, and moves onward and upward. And so we go…

(And this is Ian imitating Marv in “Home Alone” when he had the spider on his nose)

Now: June 2020, Ian is 11, going into 6th grade

That week was probably one of the most painful times I’ve had as Ian’s mom. I rode home in the front seat with tears silently streaming down my face, my boys unaware in the back seat. I felt a physical pain deep in my chest. I had blissfully existed in this world of inclusion and all of this was like a sucker punch. I was totally unprepared for that time when other kids saw Ian as “different.”

Throughout Ian’s lifetime, I have had to deal with comments, questions, and ignorance countless times. I have had to feel that pain of someone seeing my son as less, as different in a way that was not celebrated. But this was the first time that Ian had to endure that. That he had to answer those questions. That he felt different.

I learned a lot from that week, as we usually do from times that stretch us. I learned that around the end of 2nd grade and the beginning of 3rd grade is when kids start to notice “differences.” Their questions don’t arise from being hurtful but from just not knowing. I think sometimes we don’t talk about differences because we want kids to see each other as the same. But I think it ends up being confusing. Kids do see that someone is different from them but don’t understand what that means or why we don’t talk about it. So that wonder and confusion hangs out there, rather than acknowledging that we all want the same things… to be included, to belong. That we all want to be seen as equal regardless of our differences. I wish someone had told me that around age 8 is when kids start to notice and ask questions and that that is a perfect time to talk about the beauty of difference and diversity.

The best part, three years later, is that it is Ian who does the educating. He has done presentations at school for his class and other classes for the past three years. He has presented about Down syndrome to a football team and spoke about his dreams in front of over 400 people. He has become his own advocate… sharing about his extra chromosome and almond eyes and, of course, his love of Home Alone movies. Spreading the message that even though we are different, we are the same in all the ways that matter. Three years later, Ian has shown me that he’s got this. He found his own voice. And he keeps on moving onward and upward, taking me along with him.